I’m sure virtually every section of society could make a coherent case as to how it could successfully come out of lockdown. I’m sure, too, every section of society can rightly claim to be facing tough challenges during the lockdown.
The Special Education Needs (SEN) sector is no different, but those specifically on the autism spectrum have faced an especially difficult time because routine is such an important part of the daily life of someone with severe autism.
My youngest son, Adam, is now 25. He has severe autism, which involves intense and challenging behavioural problems, an inability to talk - his speaking vocabulary consists of a single word - No!
He was formally statemented in 1997 with severe autism at a very early age. At 18 months, he had a recognised vocabulary of around 20 very clearly spoken words in his red book. Then he got his MMR jab for measles, mumps and rubella. We thought nothing wrong as his elder brother who is only just a year and a bit older only had a slight temperature for a couple of days.
But a couple of weeks after Adam got his MMR jab, he stopped talking and has never spoken formal words since. But I’ll spare readers my MMR rant as this article deals with the Covid-19 challenges.
Basically, Adam has never been in mainstream education - with no powers of verbal communication, he could not cope. He needs a chart on the kitchen door to confirm his routine for that day. It has pictures of his adult day centres, his respite centre, and our home for Saturday and Sunday.
Adam loves the activities at his adult centres, so how do you explain the implications of a Covid-19 lockdown to a severely autistic adult? Imagine the confused look when his weekly location chart consists of seven pictures of his home.
And throw into the mix that we were in the middle of changing his ‘calming medicine’ and we have a very confused and frustrated adult on our hands.
The worst challenge of the lockdown are the screaming temper tantrums. He does not understand why every day is a Saturday. One moment he could be sitting calmly in his quiet room watching a DVD, the next he is standing inches off your face screaming into it - but why?
The screaming fits don’t last for a few minutes - they can go on for hours. The same is true of the sobbing fits. Suddenly, and for no apparent reason or emotional trigger, he will start sobbing uncontrollably; these could last from 20 minutes to an hour. They end as mysteriously as they begin.
We have a letter which allows us to take Adam to an area for exercise. We usually drive to a relative’s farm nearby where he can walk around the lake a couple of times and burn up a lot of energy. If that works, we can get Adam into bed around midnight.
If it doesn’t tire him out, he will get up several times during the night, switch on lights and go to the toilet - and sit on the toilet for up to half an hour. During lockdown, he has developed a unique frustrated yell; he is not constipated, or has a weak bladder - its merely somewhere to sit and yell - no one gets sleep.
Then he’s up at 7 am no matter if he’s only had a couple of hours sleep. He will wake you with the new word from lockdown - a loud shout of ‘Up!’ Being positive, we as his parents can say lockdown has doubled his vocabulary! Okay, in reality from one word to two.
The breakfast must be taken in the kitchen - sausages, toast, juice and a Kitkat. Once finished, he sets up his DVDs for the day in his quiet room; then heads into the living room to set up the same film on Sky Cinema; then takes an iPad and sets up the exact same film - the same film, especially the cartoon version of the epic Jungle Book, can be playing at a very loud volume in three locations in the house simultaneously.
His hearing is excellent, but some films have to be played as if at a full blown rock concert in terms of volume - especially the Muppets Christmas Carol. I feel I know actor Michael Caine, who played Scrooge, personally.
Even at night when we can get him into bed, he must go to sleep in his bedroom with Jungle Book playing on a video.
For walks, you need to be fit - he walks as if doing an army forced march! With the lockdown restrictions easing slightly, a nearby park becomes an alternative - and a longer route, again walked at forced-march speed.
Then there’s the ‘picking’ routine; Adam will demand that you select the film on DVD he should watch. This sounds simple on paper that he will be occupied for about an hour, but no. He wants the film changed every 10 minutes!
What we parents of severely autistic adults needs is for the Stormont Executive to work out a programme for the opening of the adult centres. Pre-lockdown, such centres formed the bedrock of a stable routine and gave us as parents some respite during the day or a chance to charge our mental health batteries in time for the weekend routine, which could include an ‘all nighter’ - where Adam sits up during the night as if having a DVD fest.
We have one activity - apart from the walking - which Adam loves; his weekly remote music lesson. Chances are, he’ll be in a good mood for the remainder of the day, if we are lucky.
The good weather has been an advantage - he can spend time on his bucket swing.
For parents with able-bodied or ‘normal’ children, they could say - switch off the lights when you come to bed if they were having such a DVD fest. Not Adam; someone has to sit up with him to ensure he does not wander off into the night.
I’m not writing this column for personal sympathy - just to highlight the additional challenges which the SEN community, and especially those with autism, face on a daily basis. We badly need those adult centres re-opened as soon and as safely as possible.
There’s much talk about society preparing for the post lockdown ‘new normal’. We as SEN parents realise all parents of able-bodied children will be facing new and difficult challenges when schools re-open.
While preparing children and students for exams is a clear necessity, my plea to the Stormont Executive is one which I’m sure many SEN parents will utter - don’t let our families and loved ones become the forgotten sector of the so-called ‘new normal’.
Listen to Dr John Coulter’s religious show, Call In Coulter, every Saturday morning around 9.30 am on Belfast’s Christian radio station, Sunshine 1049 FM, or listen online at www.thisissunshine.com
As somebody on the higher functioning end of the sutustic spectrum, my heart goes out to this young man and his father carer. Routine is particularly important for those of us who are neurodiverse; when that is taken away the inevitable meltdowns occur.ReplyDelete
John - a brilliant piece of writing but tragic at the same time. It simply fails me when I try to understand how you cope as parents. Your devotion and love are outstanding. I admire but do not envy you in that Herculean task.ReplyDelete
The Quillers who are like herding cats at the best of times, will no doubt unite on this as one in wishing you well.
John, as Anthony says, our hearts are with you on this. I will contact my political representatives as soon as I post this.ReplyDelete
My brother and his wife in Guernsey have a teenage lad with severe autism, so I know a bit of what a broken routine means for them.
I greatly admire the dedication you parents have.
John, I heard other parents of family with special education needs speak on Joe Duffy's RTE radio show recently and was greatly moved by their plight too.ReplyDelete
People with special needs, and indeed their family carers too, must not be marginalised further during this unusual time.